Bone Mets Thread
Comments
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emac, I would definitely tell your MO about the pain. Have you had your scans recently? My initial pain, before I was diagnosed with mets was sharp, but the mets weren't found until I had a lump in my armpit biopsied. I've not had any of the signs of spinal cord involvement, but I still have mets to the spine. Anyway, I don't think you're being a hypochondriac, but I would think you would want to let you MO know about persistent pain, even if it's "just for the record". Good luck with your appointment on the 13th.
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I have a shocking experience today at infusion center, apparently the interesting MO switched me from monthly xgeva to prolia every 6 month, obviously he has not discussed with me!!!! And apparently I got prolia shot last month!!! How can I live with this MO.... ok please help me I was on zometa for 7 cycles and then switched to xgeva for 4 months, and right after prolia, is that a standard protocol? Has anyone heard about it? Stage 4 is not an easy journey but this MO makes everything complicated..
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I-beat-it--- I have heard of zometa and xgeva for MBC, but not prolia. I thought prolia worked a little differently and was more for osteoporosis, not bone mets. Insurance issue? Or the MO decision? I would be asking why to your MO. Hope more will chime in. But I have not heard of prolia for us cancer patients.
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Prolia is the same drug as Xgeva but a smaller dose
https://en.wikipedia.org/wiki/Denosumab
If this happened to me, I would want to ask the onc about it, because I’d be afraid someone screwed up the orders.
I guess it’s possible a doc would want to do this to lessen side effect risk? But not without telling the patient, I don’t think.
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thanks Candy I appreciate your support xx
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here’s more on that from BCO
https://www.breastcancer.org/tips/bone_health/keep_bones_strong/targeted
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I-beat-it, crazy not to talk to you about a plan!!
Emac, I agree: you need to report this to you MO right away. You're not being a hypochondriac but rather a prudent MBC patient.
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Emac877,
I have often heard I think on this thread in years past, call if a symptom persists for two weeks. I am a little anxious and never make it that long. I hope this is helpful
Mary
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Emac - definitely report now - if anything its logged and flagged in the system in case anything happens over the weekend.
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emac...report it for your own peace of mind. It doesn't necessarily mean it's mets, so try not to get too worried (easy to say, I know). Keep us posted and good luck.
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Hi EMac, I personally have a three week rule in terms of reporting things. I am pretty active typically, often overdoing in the garden if not careful so there have been some self inflicted issues. If it concerning definitely let him know or just be prepared to bring it up on Tuesday. I only see my MO once every three or four months so reaching out by email is often my only option. Thankfully he is very responsive and seems to be fine with this approach.
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Olma, thanks for the link, I learned a lot 🙏🙏.
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I-beat-it - Wow. I agree with Candy-678, that was my understanding of Prolia too. I can't imagine an oncologist switching meds without discussing it with you. That's crazy!
Thank you all for your input on the back pain. I've been tracking this pain for about two weeks and it has gotten progressive so I called and talked to my MO's office yesterday afternoon and she ordered an MRI to be done as soon as possible. I am anticipating that will happen next week. I see her on Tuesday and will discuss it. One year in I thought I would be taking this stuff more in stride but new developments still amp my anxiety. I will update when I have news.
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Emac--I'm glad you were proactive!!
I just finished my 3rd rounds of Xeloda and was suppose to get a shot of Denosumab but found out my insurance declined it because they don't cover that med. I ended up with a 20 min infusion of Zometa. I woke up Wed night feeling like my head was in a vice and my ribs were achey. I was also suffering from Hand/foot at the time so couldn't sleep. Had Tylenol and it kicked it down minimally. Thursday I took an OTC migraine medicine but felt fatigued, had chills for 1/2 straight (thank goodness for electric blankets!) and basically felt like crap. I wasn't very hungry but if I ate a little, it'd sit in my stomach for hours. Has anyone else been able to manage these awful side effects? I'm still brain foggy today and tired. I feel like this infusion has knocked me down for 2 days.
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Pamela23, was that your first infusion of Zometa? My first was last month, and I was down for 2.5 days. They say the flu-like symptoms are usually only the first time. This month they made the infusion an hour, and it was much better. I was able to function and no fever. Ask to do an hour for the next one. Make sure you take Tylenol before infusion and drink lots of water the day before.
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Okay, folks, you guys are scaring me here -- I've not yet had either zometa or xgeva, although my MO wants me to start it at some point, I think (she's not pushing me). Pamela23, sorry that you've had this reaction. KBL, I've heard that it works better if you have them slow it down. Storing this info in my brain for when I start.
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Bev, I've been on Xgeva for a couple of years and have had no problems. It is important to warm the bottle first and have the nurse inject it slowly.
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BevJen, my insurance made me start with Zometa. I think Xgeva is more expensive. If it didn’t get better, then I could have Xgeva. I told myself if the second time was like that, I’d ask to switch, but it was much better. I had my first infusion in 30 minutes, not 20. They also gave me fluids when I was done. She plans on doing it monthly for a year and then switching to every three months. I know it’s scary when you hear horror stories. I hope you have no side effects.
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Hi BevJen,
You may not need to be worried as, if I recall correctly, you don't have a lot of bone mets. I am riddled with them. My MO didn't start me on bone strengtheners (started with something oral which was a total pain... timing of taking it was critical which meant getting up very early! The he switched me to a bisphosphonate.) until almost a year into my stage IV after my bone mets progessed. I've now been off of the strengthener since I think February - we stopped when my creatinine was jumping from the Verzenio. Bisphosphonate can be hard on the kidneys. He is unconcerned that I am off as he says it stays in your system so not sure if he will want me to go back on. (I had monthly infusions for about two years.)
All to say, I'm sure your MO will add it in if needed. It can come with a kick in terms of aches and pains so wouldn't add until it's time.
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I had SEs for only the first two infusions of Zometa. The night after the first infusion I woke up with horrible nausea (no vomiting) so I got up and took a Compazine, which didn't really help. I also had a fever for about a day and a half.
The second infusion I had mild nausea with a slight fever.
I just had my sixth infusion and had no real side effects. My temp was slightly higher than normal for me, but not by much.
Take courage, it should get easier. Be sure to report your SEs to your MO, though - just for the record. Good luck!
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I’m not sure if this question has been asked in the past, so if it has, I apologize. Knowing now that I have significant bone mets from the top to the bottom of my spine, why isn’t it mentioned on a CT scan? What modality in scans do you use to see if there is progression? The only thing that shows it for me are MRIs, so I think from now on I’m going to ask for them only. The CT scan doesn’t show any of my cancer. PET and bone scans don’t show it either.
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If anyone has had bone mets, and progressed with more bone mets, did you feel pain? I have mets on my spine and my leg hip has been killing me. I’ve been on Ibrance/Femara for years, and am bracing myself with this new symptom.
Is radiation the next course of action if it does end up being more mets?
I’ve done really well over the last 3.5 years.. just waiting for the other shoe to drop.
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finally- I think you need to have 20% of mets get worse, or move to an organ, for them to consider it progression. When I was at 3.5 years, I had "slight progression", in that a mound of mets on one hip was getting darker and darker with each scan ("smouldering mets") plus a new met had appeared mid-spine. My MO suggested watch and re-scan in 3 months, but said that I could consider consulting a radiologist to see if it warranted zapping. The RO said they won't zap unless its causing pain, so that pain you have might be your golden ticket to radiation, if there aren't a lot of new mets otherwise. He wrote up my insurance report indicating there was pain, and went ahead and zapped both places and so far the scans have been OK ever since. So I'm glad I did that rather than wait to see what future scans would show..
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Finally - I was the exact opposite. I found out about my metastatic cancer because I started having excruciating pain in my hip. I thought I had pulled a groin muscle. When I did the bone scan and PET scan I had a large met there and several in my spine. The ones in my spine, until recently, had been completely painless. I did get radiation and it did help with the pain. I had to have surgery because of the size and location of my met and so mostly I just have post surgical pain but the pain the met was causing is gone after radiation.
Cure-ious - I didn't know that about the 20%. I assumed if they found a new tumor it was considered progression so that is good to know.
KBL - I wish I had answers for you. I know that mine don't show up on X-Rays but they appear on all other modalities. I would be interested in knowing what you find out. The only thing I can think of in terms of the PET and bone scans is that perhaps your tumors have low metabolic activity. Both of those tests require a fairly active metabolic process to take up enough radioisotope to show up well. I don't know why they wouldn't show up on CT though. Maybe a density issue? I'm just guessing on that.
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Hi All.
KBL, bone scans are my nemesis, probably fo4 the reason that EMAC has suggested. Pretty sure it is low mitotic rate that makes bone scans useless for me. Your ILC is tricky though. Many of the ladies with that diagnosis have commented on the scan challenges and the way that it spreads.
I didn’t know about 20% either. Makes sense considering my MO is planning to stay the course on my treatment now if my CT of chest/abdomen (moved up given issues) is stable. Clinically there appears to be some movement with the bones but not enough to panic. Thank goodness for rads! I’m happy to stick with my current combo.
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Dumb question - what do healing mets look like on a CT vs an MRI? My spine mets look very grey, but where they radiated the pelvis looks a lighter grey.
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Re Cure-ious's comment regarding 20% as a measure of progression -- if you are interested in reading more about this, I found this article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC37085...
It details how the criteria for progression have come about -- it's an interesting read -- the title is" When Progressive Disease Does Not Mean Treatment Failure...
Pertinent to C's comments, it says this:
"In the year 2000, the Response Evaluation Criteria in Solid Tumors (RECIST) group (17) then established the current criterion for progression—a 20% increase in unidimensional measurement or appearance of new lesions."
There are other measurements discussed in the article -- such as the WHO measurement criteria, etc.
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KBL, my understanding of your question is that which tests give you a better understanding of your spinal tumors? in my experience CT scans only show bigger lesions in my spine, around 2 centimeters.
MRI of spine suggested when you have symptoms caused by neuropathy compression, pain, numbness etc. Spinal MRI gives you a better understanding of the location and size of tumors, and better view of whole spinal cord. I would ask to see a neuro-oncologist, I think they should be able to help you about bone Mets in spine. I hope I answered your question.0 -
That makes perfect sense. I have so many tumors in my spine and stomach, but they’re all small, under 1cm. No one has told me why it can’t be seen. I really appreciate it. Thank you, I-beat-it. I had the biopsy of one of the tumors, so we know it’s the same cancer that’s in my stomach.
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Very interesting read. Thanks BevJen.
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